Our story starts simply. My husband Matt and I were both 21 years old, had a precious 2 year old daughter, Michaella, and were ready to start trying for another baby. Our first child was not planned, and I wanted everything to go much smoother this time around! I went to my family doctor in March of 2000 to make sure I was in good health and we would start trying. He told me that all was fine and we were ready to go. I remember asking him if I should start taking prenatal vitamins before I was pregnant and he told me no, I was young and healthy. We started trying a few months later, and I was incredibly excited when the first pregnancy test I took came back positive! My ob/gyn doctor offered us all the health screenings that are around to make sure your baby is healthy, but I turned them all down, thinking that if something was wrong I didn't want to know it and have it ruin my pregnancy. We even went to a special Mass at our parish for expectant mothers and had the baby blessed.
My husband and I went in November to have our first ultrasound. We were so excited - we laughed and joked the whole way there. Matt wanted a boy and I wanted another girl. We paid $5 to have our ultrasound taped, never knowing what a drastic turn our lives were about to be headed in. When we were just about done, the ultrasound lady started asking me lots of questions: did you get tested for such and such, did you have an amnio, over and over. I asked if something was wrong and she said no. She then left, saying she had gotten a page and would be right back. She came back with our ob/gyn. The doctor looked at us and said, "There's something wrong with your baby's brain". My mind went blank, my heart went numb. She told us we needed to see a specialist as the baby's brain ventricles were enlarged. Matt and I asked if we were having a boy or a girl, and she looked at us with disbelief. "It's a boy", she said. I asked for our videotape of the ultrasound and she gave us our $5 back and told us she didn't tape it.
I remember going back to work and telling them what had happened, and Matt going to pick up Michaella from daycare while I waited in the car. The two of them came walking out in the bright sunshine, Michaella in her fuzzy green coat, her little hand in her daddy's bigger one. The tears started falling and I don't know when they stopped.
We had an appointment with a specialist a few days later. He said yes, the brain ventricles were enlarged, and he wanted an amnio done to check for Down syndrome. I thought, Oh good, I can handle Down's. When the results came back from the amnio, there were no abnormalities. Matt and I were overjoyed! I kept thinking that the doctors were wrong, and all our prayers and the special blessing had healed our baby boy. But when we went back to the specialist, the brain ventricles, which were already large, had doubled in size. Doubled! The doctor said something else had to be going on, and kept moving the wand all over my belly.
Then he finally found it. Our baby had an encephalocele, a hole in his skull. This made the hydrocephalus seem like nothing! We were immediately sent to another specialist, and then back to the first one, where we were told our baby would probably die. His brain would be coming out of that hole, maybe all of it or just parts of it. If we did not terminate I would more than likely end up miscarrying anyway. We were sent home to think about what we wanted to do.
That was the most gut-wrenching experience I've ever had, and it saddens me to think that people have to make these kinds of decisions. For my husband and I it was pretty easy. We are Catholic and against abortion. But even after saying that, terminating the pregnancy almost seemed like the right thing to do. Our baby would just die anyway, right? We talked it over and decided we wanted to at least hold our baby, even for a few minutes, and see what God had in store. After making this decision, I was still terribly depressed, crying all the time and closing myself off to the world. One day Michaella asked me, "Mommy, why do you have cherry eyes?" My eyes were so red and puffy they probably did look like cherries to a 2 year old. That one comment snapped me out of my funk, and Matt and I got to work.
We were going to be totally prepared for our little boy. We met with a geneticist, who told us the hole was actually very tiny and in a great spot, if you wanted a spot for a hole in the head! We found a super pediatrician who was as upbeat and positive as we were. We also met with our son's neurosurgeon, who gave us the best advice: "I'll put the shunt in after birth and the rest is up to God". Yes! The rest is up to God! I felt more and more positive every day, but I did worry if I didn't feel him moving. Did he die?
I was constantly pushing on my tummy to see if he would push back, and he always did. I saw the specialist every two weeks to check on the baby, and when I went back to my ob/gyn to check on me, she looked shocked to see I was still pregnant. She informed me that she "was not comfortable with our situation" and I needed to find another doctor to deliver this baby. She told me she assumed I would have an abortion since the baby would just die anyway. I told her that the hole was small and he would have a shunt placed soon after birth, the brain was like a sponge and after the water was taken off it would come back, some parts may be damaged but who knew? She smirked at me, patted my leg and told me I was welcome to come back after this was all over.
We soon found a new ob/gyn who was great! He told me he would perform a C-section as soon as the neonatalogists said the baby was ready. As the baby's head was getting larger and larger, I started having steroid shots to help his lungs develop faster, and then weekly amnios (5 in total) to make sure the baby's lungs were ready. At our last ultrasound the baby's head was so large it couldn't even measure on the screen, and thankfully that amnio said the baby's lungs were ready to go. We were scheduled for delivery on Valentine's Day, 2001, which was also Michaella's 3rd birthday. The night before we went in Matt and I talked about what we were expecting. We wanted no excessive measures taken to save our son's life, we just wanted to hold him and love him. I was so nervous, but also at peace.
Mitchell Charles was born at 9:30 a.m., 6 weeks early, and was absolutely perfect in every way! Though his head was pretty big, his face was heavenly. He started crying right away and took a binky, too! He needed no oxygen, and NOTHING was coming out of the hole except fluid! The doctors were all amazed! He had surgery at 2 days old to place the shunt, and at 2 weeks old he came home. He had a surgery to repair a hernia at 7 weeks, and a shunt revision at 9 weeks and another at 11 months. When Mitchell was in the NICU we did have a pretty cocky doctor who told us if he was in our shoes he would not have had this baby. He told us Mitchell was blind and deaf, and would never walk, talk, or feed himself. I told him that's why Mitchell came to us, because we would push his wheelchair and feed him.
But Mitchell can do all these things and more. He was in the early intervention program through our school district since birth and received physical and occupational therapy. At age 2 he started walking and was potty trained at 3 1/2. Mitchell did start having seizures at 1 year, but we have been incredibly blessed that his medicines seem to work well. Between the ages of 4 and 7 he was completely seizure free, and has been seizure free now for 18 months. His life is not easy, but it is so filled with joy. Mitchell is now 9 years old and in regular classes in the 4th grade. We even had another baby boy 4 years ago, and even though I was desperately worried, he was born healthy.
Having a child with a disability is rough. It is hard to watch his seizures, or his sister and brother be frightened of the seizure. It is hard to watch him struggle with things you or I find easy. But I would never change my life, ever, not one second. I would take away his pain if I could, or his fear, and oh how I wish I could. But Mitchell has taught us all incredible lessons. He has made me a better person, a better mommy. He has taught us to slow down and enjoy the small things. He has taught me to fight for what is right, and stand up for my beliefs. The love I feel for him is so intense. He is a great gift, as are all of my children, and I wouldn't trade any of them. So my story that started simple is now somewhat complicated. And that's how it should be!